The short answer
- The course goes up and down, so the end is hard to seeEach crisis is usually followed by a partial recovery. Doctors describe the timing of death with these illnesses as uncertain, and a crisis at any point can be the last one.
- Hospital stays closer together are one of the clearest signsSo are breathlessness at rest, fluid that keeps coming back, more time asleep, and less recovery after each flare-up.
- Palliative care can run alongside treatmentNobody has to choose between the heart, lung or kidney team and the palliative team. Ask the GP or specialist nurse for both.
- A written plan is what lets a crisis be managed at homeA ReSPECT form, medicines ready in the house and the right phone numbers mean a 3am crisis does not have to end in an ambulance, if that is what your relative wants.
Clinical information is from the NHS, NICE, the British Heart Foundation, Asthma + Lung UK, Kidney Care UK and Marie Curie. Every illness is different, so ask your relative's own team what applies to them.
This guide is one of a set about end-of-life care at home. It is written for a family whose relative has heart failure, COPD or kidney failure that is getting worse, and who are starting to wonder whether this is the end, or have been told it might be. If the illness is cancer or dementia, the pattern is different, and the guide to the last months and weeks is a better place to start.
Why it is hard to recognise
These illnesses go up and down, so the end is harder to see coming
With many cancers, the decline in the last months is fairly steady, and families and doctors can usually see the last weeks approaching. With heart failure, COPD and kidney failure, the illness is long, and it is punctuated by crises that the person usually survives.
Two ways an illness can go, and what to ask at each dip
- Heart failure, COPD and kidney failure: long illness with crises and partial recoveries
- For comparison, many cancers: a steadier decline over the last months
Time, over months or years
The first serious flare-up or hospital stay
A frightening admission, then a recovery that brings them most of the way back.
What to ask
- Is this illness likely to shorten their life, and is that something we can talk about?
- What should we watch for at home, and who do we ring if it happens again?
The next crisis, and a slower recovery
They come home, but walks are shorter and there is less they can do for themselves.
What to ask
- Could a palliative care team be involved alongside the treatment they are having now?
- Is there a plan for the next flare-up that could be started at home?
Crises closer together
Admissions come closer together, and each one takes more out of them.
What to ask
- Would another admission help, or could the next one be managed at home if they want that?
- Is it time to talk about the defibrillator, dialysis, or which medicines still help?
A crisis they do not recover from
They are sleeping more, eating little and not getting back up the way they did before.
What to ask
- Do you think we are now in the last weeks, and what will change?
- Can the medicines for the last days be in the house, and can fast track funding be started?
Doctors have described this pattern for many years. A paper in the BMJ in 2005 described heart failure and COPD as illnesses where people are "usually ill for many months or years with occasional acute, often severe, exacerbations". Each of those crises could be fatal, and although people usually survive many of them, their health and what they can do gradually worsen. The same paper says plainly that "the timing of death remains uncertain". Marie Curie says the same of heart failure: symptoms get better and worse, which makes it difficult to know how long somebody might live, and people with heart failure are at risk of dying suddenly. For COPD, Marie Curie describes flare-ups becoming more frequent in the last year of life, with lung function not returning to where it was after each one.
Kidney failure belongs in the same conversation, because it is also a long illness managed by a specialist team, and Kidney Care UK notes that people on dialysis spend significantly more time in hospital. Where somebody stops dialysis or decides not to start it, Kidney Care UK describes a steadier course towards the end, with the person becoming weaker and more sleepy over the last few weeks. That choice is covered further down.
This uncertainty has consequences that families feel. NHS England describes the unpredictable course of heart failure as a reason prognosis is so difficult, with no clear markers. Marie Curie notes that people with advanced heart failure have palliative care needs similar to people with cancer but poorer access to palliative services, partly because nobody is sure when to refer. Because every crisis until now has been followed by a recovery, nobody may yet have said to your family that your relative is approaching the end of life. It is reasonable to ask the question yourself, and the cards above suggest how to do that at each stage.
The signs in each illness
The signs that the illness is moving towards its end
None of these signs on its own means somebody is dying. What matters is a pattern: symptoms that no longer settle with the usual treatment, recoveries that are shorter and less complete, and more of the day spent resting.
| Heart failure | COPD | Kidney failure | |
|---|---|---|---|
| Breathing | Breathless with very little effort or at rest, and when lying down | More out of breath, even when sitting still, and more flare-ups | Short of breath, often because fluid is building up |
| Fluid | Swelling in the ankles, legs or tummy that keeps coming back, and sudden weight gain | Swollen ankles are a change to report to the respiratory team | Swollen ankles, feet or hands from fluid the kidneys can no longer clear |
| Energy and sleep | Severe tiredness, and more of the day spent in bed or a chair | Difficulty sleeping, then more time sleepy in the day | Tiredness, difficulty sleeping, then growing weaker and more sleepy |
| Eating | Loss of appetite, feeling sick, and losing weight | Loss of appetite and losing weight | Poor appetite, feeling sick, weight loss |
| Other changes | Low mood or anxiety, and problems with memory or sudden confusion | Needing much more help at home with everyday things | Itchy skin and muscle cramps |
| Hospital | Several emergency admissions in a year, closer together | Flare-ups needing hospital, or much more help at home | Dialysis becoming harder to cope with, or symptoms that no longer improve |
Breathing
- Heart failure
- Breathless with very little effort or at rest, and when lying down
- COPD
- More out of breath, even when sitting still, and more flare-ups
- Kidney failure
- Short of breath, often because fluid is building up
Fluid
- Heart failure
- Swelling in the ankles, legs or tummy that keeps coming back, and sudden weight gain
- COPD
- Swollen ankles are a change to report to the respiratory team
- Kidney failure
- Swollen ankles, feet or hands from fluid the kidneys can no longer clear
Energy and sleep
- Heart failure
- Severe tiredness, and more of the day spent in bed or a chair
- COPD
- Difficulty sleeping, then more time sleepy in the day
- Kidney failure
- Tiredness, difficulty sleeping, then growing weaker and more sleepy
Eating
- Heart failure
- Loss of appetite, feeling sick, and losing weight
- COPD
- Loss of appetite and losing weight
- Kidney failure
- Poor appetite, feeling sick, weight loss
Other changes
- Heart failure
- Low mood or anxiety, and problems with memory or sudden confusion
- COPD
- Needing much more help at home with everyday things
- Kidney failure
- Itchy skin and muscle cramps
Hospital
- Heart failure
- Several emergency admissions in a year, closer together
- COPD
- Flare-ups needing hospital, or much more help at home
- Kidney failure
- Dialysis becoming harder to cope with, or symptoms that no longer improve
Drawn from the NHS pages on heart failure and kidney disease symptoms, Marie Curie on heart failure and long-term lung conditions, Asthma + Lung UK and Kidney Care UK. Your relative may have some of these and not others.
If you are keeping a note of any of these, the dates of hospital admissions are worth writing down. When you tell the GP that your mother has been admitted three times since the spring and has come home a little weaker each time, you are giving them the information that doctors use to decide whether somebody may be approaching the last year of their life. The condition guides for heart failure at home, COPD and oxygen at home and kidney disease and dialysis days cover the day-to-day warning signs in more detail, including when to call 999.
Palliative care alongside treatment
How to ask for palliative care while treatment continues
Palliative care is care for symptoms and for the person as a whole, when an illness cannot be cured. With these three illnesses it usually works alongside the heart, lung or kidney team rather than replacing them.
- 1
Ring the GP, heart failure nurse or kidney unit
FirstDescribe what has changed rather than asking for a service by name: breathlessness in a chair, another admission, a recovery that did not happen. NICE says that when heart failure symptoms are worsening despite the best specialist treatment, the team should discuss palliative care needs and think about an assessment for palliative care. - 2
Ask whether the palliative care team can be involved
FreeNICE says people with end-stage COPD and their families should have access to the full range of services from palliative care teams, including hospices. Kidney Care UK says the kidney team can refer people to the palliative care team. Ask for the referral in those words. - 3
Ask what continues and what might change
At the appointmentNHS England is clear that bringing in palliative care does not mean stopping heart failure treatment. Ask which medicines are still helping, which might be reduced, and which symptoms the palliative team could help with, such as breathlessness, pain, itch, low mood or sleeplessness. - 4
Ask for the plan to be written down and shared
Before they go homeAsk that the GP, the specialist team, the district nurses and the out-of-hours service all have the same plan. After a hospital stay, ask the ward to include it in the discharge letter.
Palliative care is free on the NHS wherever somebody lives, and it does not depend on being in the last weeks. The page on palliative care, end of life care and hospice at home explains how these three terms differ and who provides each one, and managing pain and symptoms at home covers what the team can do about breathlessness and pain. If your relative has not yet been told that their illness may be shortening their life, or you are not sure how much they want to know, talking about dying with a parent may help before the appointment.
Stopping or continuing treatments
Decisions about defibrillators, dialysis, oxygen and medicines
Near the end of life, some treatments that have helped for years may stop helping, or may start to cause distress. These are decisions for your relative and their doctors, and families are often asked what their relative would have wanted. It helps to know the questions before they come up.
An implantable defibrillator (ICD)
Heart failure
Dialysis
Kidney failure
Home oxygen
COPD
Tablets that no longer help
All three
Going back into hospital
All three
Resuscitation
All three
For dialysis, choosing not to start is also a recognised choice. The NHS calls this supportive or conservative care: the kidney unit keeps looking after the person, with medicines for symptoms such as breathlessness, itch and poor appetite, help to plan ahead, and support for the family. Kidney Care UK has a clear page on choosing to stop dialysis, and the British Heart Foundation answers common questions about switching off an ICD. COPD and oxygen at home covers oxygen safety in the house.
If your relative can still make these decisions, they can record them. An advance decision to refuse treatment is legally binding if it is valid and applies to the situation, and an advance statement records wishes and preferences more broadly. Advance decisions and advance statements explains how each one is made.
Planning for the next crisis
Planning ahead so a crisis can be managed at home
With these illnesses, the next crisis is usually the thing to plan for. If your relative would rather not go back into hospital, the plan below is what makes that possible. If they would rather go in, the same plan makes sure the ambulance crew knows what they want.
What to have in place before the next crisis
0 of 9 ticked
Written down
In the house
Phone numbers by the phone
The NHS team visits and does not stay, so the hours between visits fall to the family unless somebody else is there. Having somebody there can be the difference between a crisis at home and a crisis in an ambulance: somebody in the house at night who notices the change, rings the district nurse and stays with your relative until the nurse arrives. A carer cannot give injections or anticipatory medicines, change oxygen settings or make a clinical assessment, and the page on what carers are not allowed to do sets out why. What they can do is described in what a carer does at this stage.
PrimeCarers is an introductory service, not an agency or a care provider, and carers on it are self-employed. You choose the carer, speak to them first, and agree the hours with them directly. Before a carer appears, their identity and right to work are checked, they hold an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and they have been interviewed online. They are insured while they work. We do not check qualifications or training, so any palliative experience a carer describes on their profile is their own account, for you to ask about when you speak to them. When you are ready, you can search for carers near you and compare their rates. If admissions are likely, it is worth knowing that under the client contract a visit you cancel is payable in full, except for unplanned hospitalisation, illness, or a reason the carer agrees.
Where nights are the hardest part, night care at the end of life covers sleeping and waking nights, and live-in care at the end of life covers a carer who stays in the house. Choosing where to die goes through home, hospice and hospital if your relative is still deciding.
Questions
Questions families ask about these illnesses at the end of life
Marie Curie lists breathlessness with very little effort or at rest, fluid that keeps building up, severe tiredness and being able to do very little. Emergency admissions that come closer together are another sign. None of these on its own means somebody is dying, and heart failure can improve for a time. Ask the GP or heart failure nurse directly whether they think your relative is approaching the last year of life.
Asthma + Lung UK describes feeling more out of breath, more flare-ups, loss of appetite and weight, and difficulty sleeping. Marie Curie says that in the last year of life flare-ups tend to become more frequent, and lung function does not return to where it was after each one. The respiratory team and the palliative team can help with breathlessness even at this stage.
It varies a great deal, and the kidney team is the only one who can give a view about your relative. The NHS says supportive care through the kidney unit can help people live for some time with a good quality of life. Kidney Care UK says that where somebody stopping dialysis has very little kidney function left, death is likely within a few weeks or months. Everyone is different.
No. The British Heart Foundation explains that an ICD only acts when a dangerous heart rhythm happens and does not keep somebody alive from day to day. Switching off the shock function means he will not have painful shocks if his heart stops as he is dying. NICE says the pacing function is not affected and the shock function can be turned back on. The decision is usually made with him and his heart team.
Yes. Palliative care works alongside other treatment, and NHS England says bringing it in does not mean stopping heart failure treatment. Having a palliative care team does not stop anybody going into hospital. What it gives is a choice, and a plan, about whether the next crisis is treated in hospital or at home.
A carer can prompt somebody to take their inhalers and tell the nurse if the technique seems to be slipping. Helping somebody take an inhaler counts as giving medication, which needs training and your relative's consent written in the care plan. A carer never changes the oxygen flow rate, which is a prescribed treatment, and never gives injections. Talk through what you would like a carer to do before they start. What carers are not allowed to do has the detail.